1. < Neuropathy

What do I do now?

Posted by cecelia19 @cecelia19, Oct 1 9:54pm

I just saw someone post about the bad side of Gabapentin but it is the only thing that is helping with my pain, taking 300mg 3x/day. I am in pure panic mode again and don’t know where to turn. Someone help me with something positive. Anything. I don’t know how or if I can go on. I saw a psychologist today to help me how to cope with the prospect of a lifetime of pain but she wasn’t much help. It isn’t her fault, I don’t think anything can help me. I am so sorry for sounding so down but I am truly struggling and don’t know where to turn.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Oct 8 10:33am
In reply to @dianec48 "Hi to fellow 20%er! My neuropathy goes from feet to hips. Occasional brief electrical snap but..." + (show)
@dianec48

Hi to fellow 20%er! My neuropathy goes from feet to hips. Occasional brief electrical snap but no pain. Just total numbness and tingling and feel like I have super tight bands squeezing all day! Like really heavy tight socks and pants. Makes for uncomfortable sleeping at night! It’s so frustrating to know there’s nothing to reverse it but so grateful to not have the pain that so many experience. ❤️

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Hi @dianec48, Fortunate for us there is a lot out there to help us live a little better with our neuropathy - https://www.foundationforpn.org/living-well/. I have that tight squeezing feeling in my legs also, but it's probably due to those stinking compression socks I have to wear to treat my lymphedema in the legs. 🙃

Hoping you have a great day!

REPLY
bjk3 | @bjk3 | Oct 8 11:15am
In reply to @cecelia19 "Are you saying that there is still some uncomfortable sensations but you are able to ignore..." + (show)
@cecelia19

Are you saying that there is still some uncomfortable sensations but you are able to ignore them as you said you don’t notice it much?

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Hi @cecelia19 ~
Not exactly. The one thing I can't ignore is the occasional and very temporary feeling of lightheadedness as I am always guarding against losing my balance and falling. I really have to pay attention to each step whether lightheadedness is present or not.
~ Barb (@bjk3)

REPLY
1 reply
anoyymous123 | @anoyymous123 | Oct 8 7:06pm
In reply to @solobeee1 "After reading these posts I have to remind everyone again that LDN - low dose naltrexone..." + (show)
@solobeee1

After reading these posts I have to remind everyone again that LDN - low dose naltrexone works for pain that we have discussed often on this forum.
I’ve had severe pain from neuropathy since 2008 & finally discovered LDN almost two years ago & I have reduced my pain about 80% since starting it. I reduced Lyrica from 400mg to 100mg & sometimes don’t need it all.
Learn more here:
https://ldnresearchtrust.org/conditions
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

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FDA JSUT APPROVED NEW MEDICINE FOR CIDP CALLED "VYVGAH HYTRULO WHY NO COMMENTS ON MAYO ORUM FIRST CIDP MEDICATION IN YEARS??????

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 8 7:16pm
In reply to @anoyymous123 "FDA JSUT APPROVED NEW MEDICINE FOR CIDP CALLED "VYVGAH HYTRULO WHY NO COMMENTS ON MAYO ORUM..." + (show)
@anoyymous123

FDA JSUT APPROVED NEW MEDICINE FOR CIDP CALLED "VYVGAH HYTRULO WHY NO COMMENTS ON MAYO ORUM FIRST CIDP MEDICATION IN YEARS??????

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There is another discussion about the new drug - https://connect.mayoclinic.org/discussion/has-anyone-tried-vyvgart-for-cidp/

REPLY
cecelia19 | @cecelia19 | Oct 9 1:33am
In reply to @bjk3 "Hi @cecelia19 ~ Not exactly. The one thing I can't ignore is the occasional and very..." + (show)
@bjk3

Hi @cecelia19 ~
Not exactly. The one thing I can't ignore is the occasional and very temporary feeling of lightheadedness as I am always guarding against losing my balance and falling. I really have to pay attention to each step whether lightheadedness is present or not.
~ Barb (@bjk3)

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I see. I have the same problem with balance but mostly in the morning when I first get up and walk from the bedroom.

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1 reply
domiha | @domiha | Oct 9 6:50am
In reply to @dianec48 "Hi to fellow 20%er! My neuropathy goes from feet to hips. Occasional brief electrical snap but..." + (show)
@dianec48

Hi to fellow 20%er! My neuropathy goes from feet to hips. Occasional brief electrical snap but no pain. Just total numbness and tingling and feel like I have super tight bands squeezing all day! Like really heavy tight socks and pants. Makes for uncomfortable sleeping at night! It’s so frustrating to know there’s nothing to reverse it but so grateful to not have the pain that so many experience. ❤️

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Do you experience issues with balance related to your neuropathy from feet to hips? I have just in feet and lower legs and I am wobbly, especially in enclosed spaces. Best wishes! Mike

REPLY
dianec48 | @dianec48 | Oct 9 8:00am

I’m preparing to have to use a walker to help with balance issues in the near future. Right now I’m just moving a little slower when I change direction so I don’t tip over😁
At 76, I have numerous hand rails to help stay upright - tub, toilet, stairs etc. constant adjustments as the neuropathy spreads.

REPLY
heisenberg34 | @heisenberg34 | Oct 9 8:42am
In reply to @johnbishop "I had not been diagnosed with neuropathy or nerve damage prior to my appointment. I had..." + (show)
@johnbishop

I had not been diagnosed with neuropathy or nerve damage prior to my appointment. I had a referral from my local Mayo Family Health Clinic to see a neurologist. They confirmed I had neuropathy and sadly got the same answers that my primary care had told me over the years - no medications available that are for treating numbness symptoms which is what I have. I'm one of the 20% or so of folks with neuropathy that do not have the pain or burning symptoms just numbness and some tingling. Which is why I came to Connect looking for answers myself. There really is no magic bullet cure for neuropathy and there are many different people out there selling dubious treatments which is why we have to do our own research.

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It is never good to receive such news. However, I can tell you that you are indeed fortunate not to have that severe pain. I am in severe pain every day, usually anywhere from a seven to nine. It robs me of a lot of joy, But, we have to face the music. Have to find alternate ways to live. Spend more time in the most comfortable position you can find. Then read, pray, watch tv, or whatever makes you happy. Don't give up. Keep searching. There are always new treatments coming out.

REPLY
cherbear2cubs | @cherbear2cubs | Oct 10 7:53am

I have just started on nortryptalling low dose which is supposed to help with sleep and nerve pain. I am going to try it for a few months. So far sleep is fair, awake several times at night but able to go back after reading for a few minutes,

REPLY
rooand | @rooand | Oct 10 9:11am
In reply to @cecelia19 "I see. I have the same problem with balance but mostly in the morning when I..." + (show)
@cecelia19

I see. I have the same problem with balance but mostly in the morning when I first get up and walk from the bedroom.

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I have the same.

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